Parents make plea for patient bill of rights at State House

Noelia Ferreira (center) spoke at the State House on Tuesday in support of a bill that would help families that use the state’s home nursing program.(Suzanne Kreiter/Globe staff)

Erin Ward, whose son suffers from a rare disease and requires 24-hour care, once spent eight months searching for a nurse to care for him at home. Noelia Ferreira went without a nurse for her daughter Abi for six months this year, sacrificing sleep from February until August so she could keep watch over her child’s seizures.

Another mother testifying at the State House on Tuesday described a nine-month stretch when she could not find a nurse to care for her child on Tuesdays. One day during that period, the woman’s mother and her daughter both required medical aid — the child for a health care complication; the grandmother for the stress of caring for her.

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The mothers told their stories before the Legislature’s Joint Committee on Public Health, where they testified in support of a proposed patient bill of rights that aims to ensure that families like theirs can find nurses. The legislation, An Act Requiring Protection for the Continuous Skilled Care of Fragile Children, would increase oversight of the state program that provides home nursing care for their children, and calls for biannual review of the program’s nursing pay rates, to ensure that rates don’t stagnate and stall recruitment, leaving desperate families without nurses.

MassHealth, the state agency that runs the nursing program, has scheduled two hikes in the nurses’ pay rate for next spring, worth $11 million, for a total rate boost of 11.35 percent. The upcoming increases follow two smaller increases implemented earlier this year, which advocates had said were not enough to make the rate competitive after years of neglect.

Parents said the proposed legislation would help to keep the rate on track in the years to come.

“What is important is that history doesn’t keep repeating itself, with the families back at the table every five or ten years,” said Angela Ortiz, the founder of the Massachusetts Pediatric Home Nursing Care Campaign, a coalition of parents of children with complex medical needs. “This bill is about creating safeguards to make sure the program works.”

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MassHealth spent about $96 million on continuous skilled nursing services in fiscal 2016, according to the state. The program provides care to about 900 people living at home with complex medical needs, most of them under 21.

“These families face stresses that are unimaginable,” another mother, Lisa Burgess, told legislators. “A bad day for them is when an alarm goes off, and their child is struggling to breathe or having a seizure … They get up in the morning and they fight for everything.”